Hi, Can anybody explain the following... - Pernicious Anaemi...

Pernicious Anaemia Society

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Hi, Can anybody explain the following situation: I have been diagnoised (about 18 months ago) with *Intrinsic factor = positve......

Booblet profile image
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I was then told by my GP that I had to have B12 injections every 3 months....*I do need them at least one per month, BUT, thanks to this wonderful site I am in the process of doing this myself.

What I am concerned about is that with the test - Itrinsic factor = positive - how does my body digest B12? and, HOW does the test result (which shows) that my B12 level is quite high when I cannot produce B12?

Ollybear.... xxxxx

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Booblet
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B12Turbo profile image
B12Turbo

Hi Gillandandy

The Intrinsic factor positive result, simply means that you are unable to absorb B12 via the Gut, due mainly to Acid and Enzymes process's. The injections simply introduce the B12, directly into the blood stream and the test results you see, are simply the blood serum level readings. If you wish to understand the process in more detail, along with many other facts and figures regarding PA and B12, then may I suggest that you purchase the book "Could it be B12" available from Amazon, an excellent book and not written in medical GobbleDeGook. When purchasing, you can often get these books via the section marked "Second Hand" often these are new when you get them and less than half price. The R.R.Price is around £14, but my daughter got one last week which looked new for £6.Plus P&P.

Hope this helps, but just be very careful when self administering, there are products out there that are not licensed and may always contain undesirable additional elements. Better talk to your G.P. explain your problem and ask if he can arrange additional dosages, hopefully on the NHS, but if not, privately, that way you can be sure what you are injecting into your body. One extra point is that you have not mentioned your symptoms and it is most likely that your G.P. is injecting Hydroxocobalamin, whilst many in the medical world, believe that Methylcobalamin is better for Neurological conditions. However, sadly this is not widely available on the NHS.

Hope you soon feel better.

Gambit62 profile image
Gambit62Administrator

a) There are lots of problems with the test that is done on NHS for B12 levels - including the fact that there are different forms of B12 and it doesn't distinguish the active form from others.

b) Humans don't actually make B12 - we absorb it from animal products in the diet, through particular cells in the ileum. To do this you need intrinsic factor which binds to the B12 molecules so they can be absorbed by particular cells on the wall of the ileum. I'm not quite sure what 'intrinsic factor positive' means - it could mean that you have antibodies that destroy the intrinsic factor, which means that it isn't binding with B12 and hence you aren't able to absorb it through the gut wal. Have you looked at the PAS website?

Would be nice if doctors actually bothered to spend a few minutes making sure that we really understood what they are telling us :) though with PA I get the impression that they often don't really understand much themselves - hence all the stupidity over injections every 3 months.

Lupylass profile image
Lupylass

My intrinsic factor was only just positive and no more. I asked my gastroenterologist what that meant.

She said that normally it would mean that I didn't necessarily have pernicious anaemia, but because I have various other autoimmune disorders she thought it was more likely that I did have pernicious anaemia.

Sometimes I don't think there's a straight forward answer, which is so frustrating as a patient.

Luna profile image
Luna

I think that the reason WHY we cannot absorb B12 via the gut is often irrelevant. There are many different reasons and usually, none of us will ever find out.

What is important is ensuring that you get as much B12 as you need. This is where the NHS fails. If I hadn't taken my own treatment into my own hands, I would not be enjoying any quality of life. Please join the PAS website. There is so much information on there and people that are happy to help. There is so much more to this condition and not even half of it can be covered here.

B12Turbo profile image
B12Turbo

Hi Gillandandy

Having re-read your post, I feel that you may not be aware of the difference between Serum B12 and Active B12. I also note that your stating that your B12 level is High, one can only assume that you are talking about your serum level. It is important that you find out not only your Serum B12 reading, but also ascertain, what, if any, use your body is making of it at the cell level. In order to do this, you need to take a HoloTc or (Active B12 Test), if the readings from this are in what we call the grey area, then you will need to arrange an MMA test, in order to clarify the exact position. If your Folate levels are also low, then it would be advisable, to arrange for a Homocysteine reading to be taken. However, whilst the Homocysteine test is a very good indicator of your B12 / Folate levels, it is not possible to test this using whole blood samples, you would need to arrange for your blood sample to be taken and immediately have the Serum separated and ideally frozen, then you can send it by post, may I suggest that you contact Denise Oblein at Guy's / St Thomas's hospital in London and talk the process through along with the costs. That is of course if your G.P. will not fund this for you. You will sadly also need a referral letter from your G.P. before the hospital can deal with your needs, but Denise will advise you FOC in any case. You can contact her on her direct line 0207 188 7188.

The main reason for my going into such detail, is that it appears to me, that as you state your B12 level is high and yet you appear to need more regular injections, it could well indicate that the B12 is simply going straight out of your body, without passing into the cell levels. B12 is a water soluble vitamin and as such, the body will tend to simply dispose of any excess, if this happens, then you may become low in the vitamin more quickly, hence your need for top ups. ( POSSIBLE !!! ???) Who knows what's happening inside your body, until you get the proper tests results.

Hope this adds to my earlier reply comments and helps you find your way through it all.

Best wishes

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